Carol S.

Liver Transplant, NASH

When you think of Carol Sacco you think family! Besides loving the Red Sox’s and the color Blue, Carol’s life revolves around her grandbabies! She is the world’s greatest Grandmother according to her 5 year old grandson Joey and 2 year old Granddaughter Emma. Our mom is a woman who has zero enemies and will give the shirt off her back to help anyone! We always knew our mom was a strong woman but no one expected her to be this strong.

When Liver Disease tried to take her down she fought harder than anyone I know. Between her fight and the power of our family and friends our Mom was able to conquer everything that was thrown at her, and trust us that was a lot!

Summer of 2013 our mom had her routine physical checkup. Carol was told to repeat a blood test. Her primary, DR. Flora Treger noticed something irregular in the blood test that warranted it to be repeated. The repeat confirmed the irregularity and her Doctor advised her to See Dr. Joel Spellun.

On August 2013 our mom was diagnosed with Nonalcoholic Steatohepatitis (NASH) by Doctor Joel Spellun. NASH is inflammation and liver cell damage, along with fat in your liver. We were told that there was no cure, nor any medication available. Recently pharmaceutical companies were hard at work due to large number of diagnoses that previously were assumed to be from alcohol abuse. Dr. Spellun was hoping something would be available the next few years as he had heard of trials in progress. For now, the only option was a transplant but that would be further down the road, about 5-10 years. Dr. Spellun told Carol to see Dr. Frederick Gordon at Lahey Hospital.

Her disease progressed quickly. Routine visits to Lahey became more frequent. Every visit was more revealing as her symptoms changed from each previous visit. Within a year, Carol was unable to work or live her life normally. She became weak to the point that she was unable to perform routine tasks. The Monday after Thanksgiving 2014, around 1 am, Carol was acting very strange. A call to 911 resulted in a rescue ride to Rhode Island Hospital. Her liver was functioning so poorly that she had an excessive amount of ammonia in her system that was effecting her brain.

Doctors and nurses worked deliberately through the early morning performing several procedure to remove the excess ammonia. One procedure we were aware of and they wanted to perform, had previously been not advised by DR. Gordon. We were told that performing that procedure would compromise a transplant surgery, my father did not authorize the procedure and asked that RI hospital confer with Dr. Gordon. A call to Lahey Hospital and after conferring with one of the transplant surgeon, it was agreed to perform the procedure.

Later that morning Carol was transferred to Lahey Hospital ASAP by Dr. Gordon. Several days later, Carol was well enough to go home. During her time at Lahey and a subsequent office visit, we were told that Carol had several symptoms that were compromising her health, making her very ill, but these symptoms were not on the list of factors that determined priority for patients waiting for a liver transplant. She was not going to live long enough to get near the top of the waiting list. Our only option was to get a “live” donor.

Christmas day 2014, Carol was very ill. Her sister in Law Lynn, who happens to be an ICU nurse, wanted our father to take Carol to the hospital immediately. Several times during the day she pleaded with our dad to take her, but he assured Lynn that he had seen her worse and Carol would rather be worse the next day than leave her family on Christmas. He promised our Aunt he would bring her the next morning. A quick call to the transplant coordinator at Lahey in the morning and they were on their way for Carol’s 2nd round of removing excess ammonia.

Again after several days in the hospital, she was able to go home. By now, according to Lahey the amount of family and friends that volunteered to give half their liver to our Mom was “impressive”. Mom and dad spent 2 days at Lahey for her to undergo extensive testing in order for her to receive a transplant. Everything went well. Our father and my brother and I are unfortunately not matches.

We were told Lahey was pursuing other options from the list of volunteers. On January 20th, 2015, while eating dinner, Carol slumped over in her chair and stopped breathing. My dad held hear head up to open her airways and with one hand called 911. He then called his brother who lives 2 streets over so they could open the door for the paramedics as he could not let go of Carol’s head and was still trying to get her to breath.

Carol regained consciousness and started breathing on her own just before the paramedics ran in the house. She was very surprised and wanted to know why her brother in law Brad and fireman were in her house! Another rush to RI Hospital. Everyday her doctor at the hospital planned for her to go home but for 12 days in a row something else happened that caused her to stay. We found out that Adam, our 20 year old cousin, was selected to be a “live” liver donor. The timing was such that Adam would have to drop his current semester at UMASS Amherst due to the time required for his recovery from the surgery. The brave young man was more than willing to do whatever he had to in order to save his aunt! He and his parents spent a very long day testing Adam to see if he was able to donate. Everything was a go and surgery was scheduled for Monday Feb 7th, 2015.

However on Thursday, February 3rd we were told that there was an issue with Adam’s blood test and the surgery was cancelled. On Friday February 4th, his mom Lynn was then asked to be ready for an expedited testing day at Lahey because she was next on the live donor list. She was told to be prepared for a call on Monday.

On February 4th Carol was transferred to Lahey because they are a liver transplant hospital and could treat her more appropriately. On Sunday February 6th my son Joey, Carol’s mom and I were visiting with my parents at Lahey when my dad’s phone rang. The voice on the other end asked for Carol. My father identified himself as her husband and failed to remember the caller’s name. He then notified my dad that he found her a liver. He was speechless. He gave the phone to my mom who then became speechless herself. My dad got on the phone and was told that surgery was being scheduled for 4:00pm and would call back soon. At 3:15pm he called back and explained that lots of things would be happening immediately and he would come to her room shortly. Doctors and nurses proceeded to attach Carol to several monitoring and intravenous devices. At about 3:45pm, Dr. Akoad came to the room and identified himself as the one who spoke to my parents on the phone. He personally transported Carol to the operating room as my dad followed. She was in surgery by 4:00pm, still amazing after all this time!

About 1:00am Monday morning, my dad was allowed into recovery to see my mom. She was being kept asleep because there was a small follow up surgery to be performed in approximately 12 hours. Later dad noticed Dr. Akoad leaving the hospital, my dad was told that it’s a good sign, if there was anything not going well he would not have left. Several hours later dad was brought into recovery and asked if my brother and I were on their way. He explained no, they live 70-100 miles away and we had just received 8 inches of snow during Carol’s surgery. He was told to reconsider. Dr. Akoad was back and the look on the doctors and nurses was of concern and sadness. Last rights were given to our mom and my dad contacted everyone he could to ask for prayers for Carol. Dad couldn’t believe how the nurses worked so hard and continuously without ever stopping.

They were constantly taking readings, changing intravenous bags among other things while reporting to Dr. Akoad and other doctors in the room.Around 7:30 am my mom’s sister in law Cheri managed to make it to Lahey to be with our parents. She did not want dad alone during this difficult time. At 8:30 am Dr. Akoad began another surgery and said he was going to do his best to save her. At 10:30am Dr. Akoad called my dad and said that Carol was going to be FINE! She was transferred to SCIU and we were told that she would remain there for 2-3 days. 6:00pm, Dr. Akoad performed a test that would require waking Carol up for a short time. He would then put her back to sleep when the test was completed. Carol responded so well to the test that he kept her awake. She was then transferred to a regular room on the transplant floor the next day! Absolutely amazing. All the doctors and nurses said that Carol is extremely strong and she is beating all the odds! Her recovery was not without issue. She had 4 subsequent surgeries in the next 4 weeks.

During all this Carols granddaughter Emma was born on January 30th. Since it was flu season my brother was advised not to bring his baby to the hospital to see her grandmother. Even though my mom had a never ending supply of visitors, the one she wanted to see most was her new grandbaby Emma. Our mom being who she is, never complained about not seeing Emma but we all knew deep down how hard it was for her. After 2 of mom’s subsequent surgeries, my brother Keith decided that it was imperative that Carol meet her granddaughter. Emma, Keith and his wife Kate came to the hospital on Valentine’s Day. Later we found out that moms liver donor passed away just about the same time that Emma was born.

Since we will be forever grateful to The American Liver Foundation and the Staff at Lahey Hospital, we wanted to raise as much money and awareness as we could! We ordered T shirts for our 30 plus walkers. We made Bracelets and key chains to sell and raise money! We asked for the Foundation to allow us a table to sell the items at the walk and all proceeds to go straight to the foundation! They not only granted us the table but invited us to the Boston walk as well! We weren’t all able to make it, but a small group of us went and we sold more items! We were so proud to raise over $2,000.00 between donations and selling our handmade items!

Carol didn’t want to just stop there, we are not only just grateful for the foundation and the hospital staff but for the organ donor and their family! She wrote a letter to her organ donor’s family, with the help of Lahey hospital our mom and her organ donors sister Alice are now friends! We are excited to be walking in the RI, MA & CT walks together as one united team! On February 5th, the day after Alice’s sister passed and the day before my mom’s transplant, Alice and my mom met for Lunch to honor my mom’s organ donor’s life, and to celebrate my mother’s second chance at life! Alice and my mom have created a strong beautiful friendship and have helped each other through the difficult times they have faced. We are all lucky our mom’s life was saved and she gained the friendship of Alice! We are very much looking forward to walking in 3 Liver foundation walks this year and hopefully selling more items than the year before!